5-year-old Audrey was born with her lungs connected to her stomach and an incomplete esophagus (Long Gap EA/TEF or Esophageal Atresia). After two big surgeries and 142 days in the NICU in Utah, Audrey finally moved home but has since needed much more surgery, now in Boston. Much of her food still comes through a tube directly into her stomach, and she has had many procedures to help her swallow food, but she is thriving today. Thank you for blessing us with your love and prayers.
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Monday, November 26, 2012
November 26
9 a.m. Monday, November 26
Audrey is still in the hospital, but doing fantastic. They even took out the IV on her foot so she can walk again, so she has nothing unusual attached to her except for the stent still inside her esophagus, and of course nothing allowed oral yet. Not sure when they'll take out the stent so that she can come home, but thankful that Justin traded with me for a day so I could come home and snuggle my kids for a bit. Had all three boys climb in bed with me this morning and tease each other by saying "MY mommy!" ("No, MY mommy!") Trying not to think about the reality that they might have to go home in 15 days, depending on what Justin's work decides. Because his tele-working is still on a trial basis, we bought two sets of plane tickets for them, one for Jan 8 and one for Dec 11.
1 p.m. Monday, November 26
She was just given approval to drink. Doctor Manfredi is now thinking of keeping the stent in possibly as late as Monday, which would make it almost two weeks in place. Justin and the doctor are contemplating having her come home and go in for frequent monitoring. Dr M really does not think this restricturing is being caused by reflux, but rather a blood supply issue to the tissue at the narrow point. He thinks it's possible they were too conservative during resection and we're still dealing with blood-starved tissue. If he's right, and this stent technique does not put a stop to the stricture, we are heading to another resection, and possibly an adaptation of the Foker growth process that does not require paralyzation, to create enough length to have a relaxed and healthy repair. I don't know what to think.
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